There’s Beauty in the Breakdown

Ronan. Did I say that I was in solitude last post? I think I remember something like that. Grrrr…not happening. Turns out, if I really want to go into deep hiding, I’m going to have to abort cancer fighting mission. And that’s not happening. I think I wrote to you last on Monday. Your 11 months fucking shitty asshole day. The week has flown by and I’m not even sure what I’ve done. I’ve hiked every single day, since I started my Inferno Hiking Challenge. It’s kind of sort of, AWESOME. I guess that’s where I’ve done all of my quiet time/solitude. Turns out, I really may need to go to India to a Buddhist Meditation retreat to get some serious solitude time. I don’t have time for that though, so the mountain will have to do. I’ve been thinking about your birthday, a lot. More so then your death day. I have a few ideas about what we will do. I think I remember thinking on Tuesday, as I was flying down the mountain, that Tuesday was an o.k. day. It was the first day in a long time that my head didn’t feel foggy or weighed down. It was the first day in a long time that I thought to myself, alright… this is easy. You can totally do all of this. This meaning the 1 billion ideas I have roaming around my head in regards to you/childhood cancer/bigger picture/cancer is an asshole plan. The hiking and being outside with nature seems to really work for me. That and Dr. JoRo go hand in hand with saving my life. I’ve been doing alright without her here. The best that I can do. I repeat a lot of her words in my head and try to make myself be mindful of every single thing that I am feeling. She’s been checking in on me a lot and I actually went down to the MISS office on Tuesday where I sat in her office to get some shit done. Thanks, Yasaman and Kathy for letting me crash the place for a bit. I was able to be productive for a few hours and it felt nice to get some things checked off of my never-ending list.

I’ve been spending a lot of time with your brothers. They had a friend over this week to play. It was nice for all of us. I miss doing things like that with them. I miss the days when play dates ruled our world and cancer did not exist. I took them swimming and I allowed myself to get lost in a book for a bit. I never read anymore. I’m starting to do it a little more of it. I have to try for my mental well-being… I’ve been a reader since before I could freaking read. It’s always been a part of me. For as hard as it is for me now because my concentration is shot, I really want it back in my life. Your daddy asked me a couple of weeks ago if I ever thought I would start to read again. He said to me, “Remember when you used to read a book, in a day?” Yeah, I remember. I remember a lot of the things I used to love to do that I just don’t do anymore. The self-torture is never-ending around here. I don’t like to do things that make me feel good. It does not feel good to me to feel good anymore. It just comes with a ton of guilt/demons/you should not feel happy about anything because you are gone. Even the one thing that makes me feel o.k. like exercising, comes with a heavy price tag. Don’t think I’m not beating myself up on that mountain to make myself physically feel the pain because I am. I am constantly telling myself if it doesn’t hurt or I’m not puking, I’m not trying hard enough. That nothing is good enough. I couldn’t save you, so why the fuck should I save myself? I know why. UGH. For as much as I don’t want to, I do know why. I see the shreds of happiness you leave around. I feel like I am holding on to them as tightly as I can. I’m trying my hardest not to let go, Ro. I am trying.

I had a board meeting last night. It lasted almost 5 hours. It was beautiful. It was painful. They always are. Nothing beautiful in this world, comes without pain. It’s just they way life is. But once again, sitting in that room with the loveliest little souls alive, I felt blessed. And thankful. They all love you so deeply and so much, that it sometimes leaves me speechless. We talked about a lot of foundation things. We talked about your birthday and death day. At one point, I had no choice but to put my head down on the table and sob. I was trying my best to be strong, but when it comes to talking about your one year shit, there is no being strong. There is no need to be. Especially in a room full of them. I cried. I told them all how nothing seems good enough. I told them all how I have been racking my brain, just waiting for something to come to me, to honor you. But it’s not happening. This is what I have for May, Ronan. The day you died. Your birthday. Mother’s Day. The day we had your funeral. Your Daddy’s Birthday. I mean, really world. Could you throw one more thing in there for me to deal with. May is awful. May is horrific. I wish I could bypass that month all together. I know I have to get a plain in place, otherwise I’m going to be fucked. If I don’t have a plan, May will spiral out of control. Nobody can save me from May. It’s coming and there is nothing I can do about it except try to take the days that I know are going to be the hardest, and try to deal with them, head on. What choice do I have? I can’t bury myself or slit my wrists. I just won’t. I promised two very important people this. I’m not breaking my promise to either one of them. I love them too much.

Babydoll. This is all I can do tonight. It’s late. I’m tired. I have a busy day tomorrow. I have a busy day, but I’ll still get my ass up on that mountain, to have some time with you. I love you. I miss you. I hope you are safe. Sweet dreams.

xoxo

In a New York minute

As Ronan slept last night, I found myself cuddled up on the single little bed that we have in the room with Woody. It is so tiny but I fit absolutely perfect in it snuggled up to Wood. At one point, he was rubbing my back while I was sitting up, looking at the floor. It was dark in our room and I just started to cry. He continued to rub my back and said something that I will never forget. He told me how sad he is that this is my life, that he only wanted to give me the best life ever. I wish I could say I came up with some uplifting words to say back to him, but I only nodded my head and continued to cry. We ended up whispering to each other about some things back and forth. I cuddled up on the little single bed with him for a while. He made me laugh by reminding me how when we were so young…and on our 30 day trip to Europe,while in London,the hotel we were staying at only had 2 twin beds. I had insisted on not sleeping in my own twin bed, but in his twin bed with him. It was cramped to say the least but all I wanted was to be as close to him as possible 24 hours a day. He said this was just like London and we both had a good laugh. Hardly London, but for a second I pretended like it was. Just the two of us, no worries, no cancer, no tears. Just us, blissfully happy, with not a care in the world. Seems like a lifetime ago. It’s nice to know after all of this, we can still go back there, even if it is only for a few minutes as our baby boys sleeps peacefully beside us in his hospital bed.

This morning I got a wonderful visit from a wonderful boy. Yes, I say boy, because he is only 26 and 26 feels so young to me, even though I am not too much older. I have talked about Ronan’s last roommate at Sloan on my blog before, Phoebe. The beautiful Phoebe, with the sparkling fighting spirit just like Ronan, and the bravest soul. During our stay at Sloan, while sharing a room with Phoebe, we became friendly with her cousin, Jonathan. He spent a lot of time with Phoebe having intense talks with her and teaching her all about life. Tricia, Macy and I all fell in love with the two of them. We have kept in touch and Jonathan stopped by this morning on his way to take the train to spend the week visiting Phoebe and her family at their home. It was so nice to see him and introduce Woody to him. He spent about an hour with us, and I got to hear all about the trip he just took to India,  before Ronan gave him the boot:) We had a good chuckle about that and Jonathon made Ronan laugh by telling him not to worry about it, that he was used to getting kicked out by ex-girlfriends, parents, etc;) He had Ronan is stitches even with how terrible he is feeling. It warmed my heart to see him and I sent him on his way telling him to give our love to Phoebe (who is doing wonderfully) and her mom, Ellen. I hope to see him again soon as he is now a friend for life. Tricia and Macy were both very sad that they were not here to see him too. That just means both of those girls have to come back here so we can orchestrate a reunion with Jonathan. Before we all do the NYC Marathon together once Ronan is well.

Woody went off and worked for most of the day. I sat and cuddled with Ronan and played Star Wars with him in his bed. We sang a lot of songs and I got him to get up a little bit so we could look out the window and shoot the snipers on the roof of the NYC buildings. He is still hurting and now is saying that everywhere hurts. I am doing my best not to panic and hoping it is just he hospital blues. We had a visit from the floor doctor today and his team as they were doing their rounds. It’s the first doctor here the I have met that I immediately didn’t like. He was condescending to say the least. As soon as he left, I gave Woody “the look” and he started cracking up laughing saying he knew I was going to bitch about him. I think my exact words were, ” I want to punch that guy in the face.” Woody agreed. The guy was a douche and I did not appreciate the way he was talking to Ronan, Woody or myself. He used some really stupid analogy on Woody when Woody asked if we could be discharged today. We both knew that the answer was going to be no, due to the pain control, but the way the doctor went about telling us no, was not necessary. We are not idiots and he could have said it a little more nicely instead of treating us like we were morons who came so far away from home. All the way from the Wild Wild West of Phoenix, AZ, where apparently, we have not evolved. I did also did not appreciate the way he made us feel like radiation and chemo was not going to do the trick for Ronan’s pain. We were told not to expect the pain to ease up until the end of the week. It is only Monday, you dick. Give some very scared parent’s a little ray of hope instead of going straight into what our options are if this doesn’t work. I don’t want any other options now, because this is going to work. I hope I never have to see that doctor again because I may just give him a swift kick in the balls.

Dr. Modak came by just as I was freaking out in my head over Ronan’s pain. He asked how he was doing, I said not well, and I told him we were very worried. He reassured me that everything was going to be o.k. and that the radiation was going to take some more time to kick in. I straight asked him if he feels like we can still get this under control. He told me without a doubt. Dr. Modak would not lie to us; my faith is in him completely. He said the combo of the chemo and radiation will work. We will take care of this little bump in the road and get Ronan back on track. I have no doubt about this.

After Woody returned to Sloan after a long day/evening working, I ran out to go back to the RMH to shower and gather up some new clothes. I was tempted to go on a run, but it was already 9:00 p.m. here and I wasn’t feeling up to being dangerous tonight. I had Marisa’s little voice in the back of my head chirping away about running in Central Park at night. I was way too tired anyway. Hopefully tomorrow I’ll sneak in a some time and get a run in. Lord knows I really need it even though my energy level is shot due to hospital life. It really takes a toll on me emotionally and physically, no matter how fun we try to make it.

Back at Sloan now and all is peaceful. Ronan is sleeping, Woody is on his computer, and our adorable roommates are listening to some show on their computer and laughing. The girl we are sharing a room with is a senior in high school and she has a girlfriend spending the night with her tonight. Her sister has been here every other night. They are adorable Jewish girls and I have a had a blast watching them celebrate Shaushan Purim all last week and it ended last night. They have been dressing up in costumes, laughing and talking all about their religion, beliefs, high school, etc…. It has been very sweet and uplifting. Never mind that one of the girls is very sick with cancer. Has not dampened their spirits at all. It is roommate heaven, as far as having to share a room goes.

It’s officially very late here… and I am a sleepy girl. Please continue to send Ro your strength and love…. please let his pain subside. And New York Miss Macy…. no more tears tonight my love. He is going to be fine. I love you.

G’nite all you beautiful people. Sweet dreams to  you all.

xoxo